Hello, my name is Rob. I’m 68 years old and I live in Spruce Grove, Alberta with my beautiful wife of 43 years, Janice. My wife and I share 2 amazing children together, Amy & Sean. They have blessed us with 4 beautiful grandchildren, Hanna, Clark, Lily & Grant. We’re a close family, we enjoy family dinners with all the kids, summer fishing trips, hockey games, sleepovers with the grandkids, hanging out in my shop sharing endless laughs & experimenting with different recipes on our Smoker BBQ.
I was diagnosed with ALS in July of 2022. Prior to my diagnosis, I worked for nearly 40 years as a locomotive engineer. I always had a passion for operating machines, whether it was hot rods, boats, tractors (I even took some flying lessons before hiring on at CN Rail in 1976). At the time of my diagnosis, I was operating the famous 1919 steam engine at Edmonton’s own cultural tourist attraction, Fort Edmonton Park.
In January, of 2017 I suffered a pretty major heart attack. As a result, I had stints placed in my heart and was put on a few ongoing medications to keep me from having further complications down the road. Some of these medications seemed to slow me down a bit and had me sleeping in my lazy-boy earlier than I normally would. My family noticed as well, but also figured it was medication/heart attack/age related. In 2018 I started to speak a little slower, it was very subtle at first. My speech slowly started to slur after a short time. My initial thought was that I had a minor stroke in my sleep or suffered a bad concussion in a recent work injury. I was referred to a neurologist, who did a few tests on me, and nothing seemed abnormal. So, I continued to work in my “retirement” and carried on with life.
Over the next couple of years my speech slowly got worse and in early 2022, my right leg started to drag slightly. I was referred to another neurologist who ran several tests on me. His diagnosis was PLS (Primary Lateral Sclerosis). PLS is like ALS, with many similarities and commonly mistaken for one another. Yet we were almost relieved with this diagnosis, because although it was not great, it only affects your upper motor neurons. It would disable me, yes, but it wasn’t fatal. I was sent to the Kaye Clinic in Edmonton to see more doctors and therapists, where I was quickly diagnosed with ALS in July.
With my mobility on the decline, I made the difficult decision to retire fully from the career that I loved so much. I couldn’t risk falling or tripping at work and hurting myself, or worse. I had to consider the public's safety, as well as my coworkers' safety.
At the same time, my family and I made yet another difficult decision to sell our much-loved acreage home of 33 years. We built a beautiful life there with so many great memories. Our children helped with the huge undertaking, as well as our wonderful neighbors, family and friends who all wanted to do as much as they could. We moved into a more easily accessible bungalow in Spruce Grove, much closer to my son and his family. It’s a real comfort to have them so close.
Both the Kaye Clinic and ALS Society of Alberta have been a huge support since my diagnosis, providing things like equipment, aids and home visits over the last few months. After learning how much I love hockey, the Society arranged to have me go watch a Calgary Flames game with my son Sean, my brother Willy and his son-in-law Nick. We all got to meet Mikael Backlund who donated the tickets – what a phenomenal experience!
In March of this year, we held a very successful fundraiser for the ALS Society of Alberta which was hosted at the Edmonton Clansmen Rugby Club. It was an awesome night! We had family and friends attend that we hadn’t seen in years. How nice it was to see everyone together showing support for our cause.
As I continue living with ALS, I know I have the unwavering support of my wife Jan, who has been incredibly strong for our family, my children Amy & Sean, and their spouses Joe & Lise, and the ALS Society of Alberta.
Thank you for reading my story,
Rob